What I Didn't Know Before I Met My Daughter With Spina Bifida

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I read an article recently (My Child’s Disability is Not a Tragedy,) which threw me back to my daughter’s prenatal diagnosis of spina bifida when I was 20 weeks pregnant.

Here’s what I remembered: at that moment, I did believe it was a tragedy. It felt like a tragedy. It hurt. It was terrifying. I didn’t know if I could do it. I knew I still wanted her, but I was scared out of my mind. I was sad and blamed myself. I was hyper-aware of having a healthy pregnancy, took my vitamins, and followed all the rules, but how could it be anyone’s fault but mine? She was inside of me.

Lily playing ukulele.
Lily playing ukulele.

The 18 weeks between diagnosis and her being born were hard. Really hard. I only knew what I’d read, researched, and what doctors had told me. I could tell you the percentage likelihood she would need a shunt to treat hydrocephalus, and how many millimeters the ventricles in her brain were on ultrasound. I knew she had the lemon and banana signs to signify a Chiari II malformation, but that her cerebellum wasn’t herniated into her spinal column badly enough to qualify for prenatal surgery. I could rattle off which muscles in the body were impacted by a lumbar level lesion. I read medical studies and devoured data like a ravenous beast, obsessed about her measurements on every growth ultrasound. I met the doctors and surgeons who would take care of her, and knew step by step what would happen the day she was born, because I went to every appointment with a notebook and list of questions.

I knew all this and more, but I didn’t know her.

There is a huge difference between knowing information about a disability and knowing people with a disability.

I know her now, and she is definitely not a tragedy. She is spunky and full of life, and more resilient than anyone I’ve ever met.

Lily with her family.
Lily with her family.

She sings.
She dances.
She is hysterically funny.
She overflows with determination.
So many people have told me she inspires them personally.

People tell you that children with special needs are a gift. Before I had one, I didn’t understand how that could be true. Now, I get it. She has to work super hard for an incredibly long time to master skills that other kids figure out in a week, but she does it with the happiest attitude you could imagine. Her spirit radiates, and you can’t help but love her and be happy she is in your life.

When she was still an infant, I had a few experiences like the woman in the article. I had people tell me, with mournful expressions, how sad it was that she has this “thing” wrong with her. A few times, I had friends cry when I told them Lily was born with spina bifida. It felt odd to comfort these people, and to assure them that my girl is wonderful exactly as she is.

When these events happened, I was past the sadness. I knew her, and she was so far from a tragedy that it caught me off guard when people reacted this way. However, all they had was misinformation, and a false image in their mind of what it means to have a disability.

My challenge to you is to take time to get to know someone, or multiple someones with a disability. Grab an eraser and scrub out any images you have in your mind regarding what it means to be disabled. Open yourself up to fill that space with your experience.

Don’t be scared. Be excited. Your life will be richer, and you’ll learn a ton.

This article was originally published on AbilityHacker.com.

The Mighty is asking the following: What’s one thing you thought on the day of your or a loved one’s diagnosis that you later completely changed your mind about? Check out our Submit a Story page for more about our submission guidelines.

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How Earning a Black Belt in Karate Changed My Life With a Disability

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My name is Paul Brailer. I am 43 years old and was born with spina bifida. I am a 2nd Dan (degree) black belt from the Art of Karate in Barberton, Ohio and founder of Criptaedo, a non-profit organization working towards tax exempt status.

Self-confidence didn’t come easy for me. Growing up I was told what I should, couldn’t and can’t do by people who were trying to “protect” me from being hurt physically or emotionally. This led to low self-esteem and low self-image which followed me into adulthood.  As an adult, I would look for the approval of others whom I perceived as better and/or smarter than me.

Paul Brailer with his martial arts instructor.
Paul Brailer with his martial arts instructor.

It wasn’t until I started martial arts that my self-confidence grew because I wasn’t being “protected.” I had to earn my rank, and it was harder for me because I had to modify techniques. An example of my modifications is shown on the video. To go from 1st to 2nd degree black belt, the board break is 5 boards in 8 seconds or less — 3 with feet and 2 with hands. I had to come up with a way to break 5 boards in 8 seconds or less with just my arms. My belt wasn’t given to me just because I was disabled, like some other things in my life.

After earning my black belt, I realized the need for self-defense for the disabled. That is how Criptaedo got started. Martial arts has helped me with my self-esteem and has given me a platform to reach the disabled community. I have been a part of Abilities Expo and numerous other local events. My goal for Criptaedo is to partner with existing martial arts schools and teach them how to teach disabled people. I want to show the disability community that you don’t have to be a victim of violence — you can learn to defend yourself. Just because people tell you that you can’t do something, that doesn’t mean it’s true. You’ll never know until you try.

Learn more at Criptaedo’s Facebook page.

The Mighty is asking the following: What was one moment you received help in an unexpected or unorthodox way related to disability, disease or mental illness? Check out our Submit a Story page for more about our submission guidelines.

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What I Wish I Told the Stranger Who Pitied My Daughter for Using a Walker

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We were at the airport, coming back from a wonderful, week-long beach vacation with extended family. Having arrived early with our two young children in tow, we took it upon ourselves to try to keep them occupied and in a good mood for the flight back home. The airport was pretty empty, so it was the perfect opportunity for our almost 2-year-old, Adelaide, to practice walking with her walker. Adelaide has spina bifida and just started using a walker a month prior. Getting her to the point of walking with a walker has been no small feat, let me tell you.

toddler using walker at airport
Adelaide walking at the airport

For once, she happily agreed to go exploring with her walker, and I proudly walked next to her, pointing out the little airport shops and knick-knacks they sold. She stopped every so often to dance to the music playing over the speakers. People waved to her, and she smiled back at them. People complimented her, telling her what a good job she was doing, and I thanked them in return, swelling with pride.

When we made it back to our gate, she ditched her walker and crawled over to her brother to play with him. I sat down with my coffee. The man next to me, a stranger, leaned toward me and asked, “Why does she wear those things on her legs?”

“Her braces?” I replied, “Those are to help provide support and stability for when she walks.”

“Oh,” he replied, and went on to tell me that his daughter had something similar when she was young, but she didn’t need them anymore. “What does she have?” he asked, obviously referring to her disability.

I replied that she has spina bifida.

“Will she grow out of it?”  he asked.

“No. Spina bifida is permanent. You are either born with it or you aren’t. But that’s OK. She’s doing great,” I responded awkwardly, as I have never really had conversations with strangers about Adelaide’s disability.

“That’s a shame that she has to use that,” he responded, pointing to her walker. “I just hate to see someone so young struggle so much already in life.”

Struggle? Adelaide’s amazing ability to walk was a struggle? I was puzzled; that was not how we viewed it. Not even close. I didn’t really know how to respond to him. I guess it’s the first time I saw her from a stranger’s point of view. To us, her ability to walk is an achievement, not something to pity. We are very proud of her for that accomplishment, as we knew there could have been chance that she would have never been able to walk at all with her diagnosis. We are grateful she can use a walker, so unbelievably grateful.

young girl standing with a walker
Adelaide and her walker

The first time Adelaide’s therapist sent me a video of her using a walker while I was at work, I wept. Like shoulders heaving, face swelling, nose running kind of weeping. I guess you could say I “ugly cried.” It was the most beautiful thing I’d ever seen in my life. She’s gotten so much better in that one month of walking, too. When I see her use her walker, I see a child that is looking at her peers at eye level instead of looking up at them from crawling around on the ground. When she uses her walker, she doesn’t have to wear knee pads that need constant adjusting. When she uses her walker, I don’t have to wipe blood and dirt off her knees and hands. When she uses her walker, sometimes she announces her pride in herself as well: “I’m walking! I’m walking!” she will yell to us excitedly.

I wish I had the words at that moment to tell that man those things, but I was too caught off guard to express those thoughts. I wish I could have conveyed even the slightest amount of our pride in her accomplishment, because it’s been something we’ve worked diligently toward ever since she was born screaming and kicking her legs.

I suppose I will be better prepared next time. At least I hope I will be.

The Mighty is asking the following:  Tell us about a stranger’s comment about your (or a loved one’s) disability, disease or mental illness that has stuck with you for one reason or another. Why has it remained significant to you? Check out our Submit a Story page for more about our submission guidelines.

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What I Wish I Would Have Known After My Daughter’s Spina Bifida Diagnosis

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It’s going to be better, and worse than you expect. But mostly, it’s going to be better.

Amelia smiling holding a model of a brain
Amelia.

I thought my purpose that day was to determine if my child was a boy or a girl. Boy, was I wrong! My daughter Amelia was my third child, and when I headed into my ultrasound at 19 weeks pregnant, my goal was to find out if my child would be Amelia or Gabriel. What I didn’t know, is she would introduce us to a whole new world.

After getting only the most brief information possible from our ultrasound tech, my husband and I nervously walked into the OB’s office several long hours after the news that our baby had spina bifida (SB). This was in 1999, so the information available on the internet was even less reliable than it is today, and I didn’t know enough to know which sources to trust.

My OB greeted us by saying, “I’m so sorry. This is the worst news anyone could ever get.”

Even then, not knowing much more than the fact our child would have issues with her spine and brain, I knew his words were untrue. I could think of so many worse pieces of news, and I was shocked that he lead with that statement.

My daughter is fifteen now, and I feel like I’ve made it through the intense childhood years, when I was learning something new about her diagnosis, her abilities and her care constantly. She’s old enough that I can back up and see our past fifteen years together as including more challenges than I had expected on that January day in 1999, but also more amazing moments than anyone ever told me I could hope for. By far, the amazing ones win.

Amelia has had over seventy surgeries, including more than thirty shunt replacements.  She had a tracheostomy and a feeding tube, and we joke that we’ve seen almost every specialty clinic at our children’s hospital. There have been times when I was overwhelmed by the challenges she’s had to overcome, and the stress I’ve felt while trying to keep the whole family (she has two older sisters and two step-brothers) functioning. I don’t want to imply that these times don’t happen, or even that they’re rare, but this is the side of disability I believe too many people focus on. What I wish I had read about when I got her diagnosis was all of the absolutely amazing times we would have because of her diagnosis.

Amelia with a friend smiling
Amelia.

The diagnosis of spina bifida made me search for a larger community to belong to, and this has been instrumental in my family’s ability to understand the diagnosis, share and receive support and make life-long friends. When I was pregnant I happened to find an internet support group of other women whose children had spina bifida, and we have remained close to this day. They are the first place I go when I need a group that “gets it,” and is there to cheer our accomplishments or help us through the challenges. My local SB group allows my daughter to become friends with others like her who are successful teens and adults, be a mentor to younger kids figuring it all out and find inclusive, exciting opportunities nearby. Beyond our diagnosis-specific network, I’ve been forever inspired and excited by the wider subset of those with disabilities and those who love them.

Facing so many surgeries, especially, has taught my daughter and me to enjoy each success, regardless of the size, as they come. I remember worrying if she would have friends. Now she knows more people than I do when we go out to the grocery store. A visit to the hospital means adding in an extra thirty minutes because Amelia will be stopping to talk to fifteen people in the halls. She stops to tell kids waiting nervously for X-rays or procedures that they’ve got nothing to worry about.

We also know the importance of humor and find it wherever we are. Recently, we celebrated two years without a shunt surgery by making a Jello-mold brain and inviting our friends over.  She gave her g-tube, her hernias and her external ventricular drain (EVD) names. She has light-up casters on the front of her wheelchair so little kids will think it’s cool instead of being scared of it.

Yes, life with a family member with a disability will have challenges. But above the challenges, will be the joy. You will learn more about yourself and others than you could imagine. You will meet inspiring people throughout the disability community, and see through them, and your own child, that we are not judged by what we are given, but by what we do with it.

The Mighty is asking the following: Write the article you wish you’d found the first time you Googled your or a loved one’s diagnosis. Check out our Submit a Story page for more about our submission guidelines.

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When My Child Seems to Be Struggling and I Seem Indifferent, Please Remember This

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red shoes in a wheelchair It’s painful isn’t it? I feel your gaze, and from the corner of my eye I see your facial expression matches what I feel inside every single time. I see the fear as you watch, and I cannot reassure you he won’t fall or that there won’t be tears. I see you look at me, and I bet I look indifferent. I’m sitting holding my phone seemingly engrossed in the latest Facebook drama and unaware to what is playing out before us. I’m not.

I am absolutely gripped by fear because I know he very well may fall. I know this is so hard for him. I know every single thought you are thinking, but I must pretend I’m not even noticing. I must become hardened to the falls and the failed attempts. Yes, my child must fall before he can soar.

It has become my job to sit back and watch my 5-year-old sweat great drops as he hauls his non-working legs up a flight of stairs. I must look away as he tests his limits. I have to pretend and say, “yes, you can climb up into that chair by yourself” while inside I can’t figure out how he would possibly have the physical strength. And when you stand up to catch or help him, I will suddenly be available. Not available to help him through this task, but to stop you.

Yes, it is not easy to see my son work so hard or fall so far, but if you help him he will become reliant on that help. He will learn to be handicapped by his mind, not his body. I must do this because if I don’t, I have disabled my son. Fear and helplessness will paralyze him more than being in a wheelchair.

Last week I made the mistake of limiting my son in an effort to protect him from failure. We were at the doctors office, and he wanted to climb from his wheelchair up onto the exam table. I told him no and lifted him up onto the table myself. After the doctor left and I had transferred him back to his chair, he pointed to the table and said, “Israel, do it.” I started to tell him no because in my mind it was impossible and he would just fall. But I stopped at the look of sheer determination on his face and let him try.

With pure grit and strength he grabbed the plastic top of the exam table and began to pull himself off his wheelchair up the side of the table. Halfway up, he was dangling, and in my mind we had reached the point I was going to catch him mid-fall and place him back in his chair. My hand poised under his backside, but I didn’t touch him. I quietly said, “You can do it.” I waited several endless seconds, and with a burst of strength he dead lifted his body the rest of the way up and into a sitting position. I was completely stunned. My child had just transferred from a child’s wheelchair onto an adult exam table, without handholds or assistance. He just looked at me, grinned and in his emergent English said, “Israel, do it!”

Israel was born with thoracic level spina bifida, which means he has no feeling from the upper waist down. Placed at birth in an orphanage, he was deprived of everything but the basics to live. He had all kinds of medical issues listed, many I had never even heard of. He was listed as a child who would never run, never dance, never walk. A child who would not be able to use the restroom on his own. A boy who was never what I imagined in a son. We picked a child with a diagnosis that might devastate parents. But the reality is this, we did not pick out a child with a true impairment. We did not pick up a child from an orphanage in Eastern Europe who was handicapped in any way that truly mattered. We have chosen a child whose heart beats with love and kindness. We have picked a child whose internal qualities outshine any physical impairment he has. A boy who fights for independence and freedom. We have found a child who was defined by his disability in an orphanage, but when given a family and equipment, has absolutely soared.

Israel’s determination is like nothing I have ever experienced. Tasks and activities that seem impossible, he conquers. He has not backed down from the hard things, and in the five months he has been home, can climb stairs, pop wheelies in his wheelchair and transfer from the floor into his wheelchair unassisted. Every mountain that seems insurmountable is attempted with a face of determination and strength. And as his mother, I’m the one learning to let him try things that seem too hard. In the orphanage he had to fight for every scrap of worth and independence. The very things that seem so devastating about his life have actually shaped him into an incredible child. I’m the one who has had to learn to get out of his way. And it seems ironic that I once feared how he might hold our family back in going places and doing things. Seems like the opposite has occurred, and Israel has taught us not to let things hold us back. He has completely changed our parenting.

israel flexing his arms

So, I ask that when you see my son struggle and I appear cold and indifferent, do not look at me and cringe with judgment. Please look my way and smile. Silently share my fear, and encourage me. Because I am raising a man. A man who needs to fall before he can soar. A man whose character and strength will run deep in his veins and will be obtained through scars, falls and trials. I am raising a man who will get back up, again and again because his mama said he could.

Follow this journey on Ransom for Israel.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.

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I Didn’t Realize I Had a Disability Until I Was 16

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Before we get into our topic of the day, I need to offer a caveat: This post is based solely on my experience and doesn’t reflect the entire disabled population as a whole. I offer these insights in hopes of helping others who are going through a challenging time that can be jarring and confusing.

I didn’t realize I was disabled until I was 16 years old.

Seriously.

The fact I was born with spina bifida makes that last statement seem completely illogical. But it’s true. Let me explain.

I grew up the youngest of three in the late ’70s in a small town in the Midwest. Since my sisters were both able-bodied and our town was small, I was normally the only person in a wheelchair and braces around. When I was really little, I was able to get around with just braces.

My parents worked hard to treat me just like my other siblings. I had chores around the house and would get in trouble if my assigned tasks weren’t done.

In school I was mainstreamed into a regular classroom and taken out only for short times for physical and occupational therapy. Those were the only times I was treated differently from my classmates. I was also the only disabled student in my kindergarten, elementary and middle school classes.

This was all well and good. It helped me develop friendships that were based on who I was as a person and not on my disability. I was able to develop a thick skin. But there was one drawback I experienced.

It’s a funny thing being a kid. You don’t think much about the future. When you do, sometimes the things you had imagined for yourself turn out differently.

And so it wasn’t until I was 16 and in high school that I realized I had a disability. And there was nothing I could do to ever change that.

Whoa. Heavy stuff.

There was definitely an exact moment when it hit me. And it felt like a ton of bricks (I know this is an overused colloquialism, but, in this case, it’s the truth). In that moment, I froze.

So how did I get through it and come out stronger on the other side? I’m glad you asked:

1. Verbally saying your diagnosis aloud can help you to accept it. Writing it down in a journal can also be cathartic.

2. Seek professional help. This was the best thing I was able to do with the help of my parents. It was also during this time we discovered I had been living with a chemical imbalance, which caused depression for a long time prior to this experience. There’s no shame in seeking outside help.

3. To parents, listen to your child. It may seem strange they’re just now coming to terms with reality, but hearing their words and validating their feelings will go a long way towards healing.

4. Take a day. Again, this realization can be quite jarring. Taking a day to reflect might be a helpful technique. I know for myself that taking a day off school helped me to focus.

You can and will get through this and come out stronger on the other side. I’m pulling for you!

Follow this journey on Be Anxious About Nothing.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

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